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  • Rebamipide, so far

    Sorry, been awol for a while--that pesky REAL life of mine interfering with my virtual one, again.

    A quick update (notice that whenever I say "quick" or "brief" I am lying?) on my experience as a subject on the rebamipide study, for anyone interested.

    Finally started the drug (or placebo) after the washout period ended on this Wednesday (6 April, two days ago). Obviously, you are not supposed to feel better after 2.5 days on this medicine, and I don't. A few observations:

    Caveat: I don't want to speculate as to whether I am getting placebo or not--don't want to get thrown off the study.

    1. The stuff is in a base very similar to Soothe eyedrops. This is unfortunate for me, since I don't like Soothe much. For the uninitiated, Soothe is a milky liquid, both in color and consistency, as is the drug I am getting. Gives me a very "whitewashed" visual experience for about 2-3 minutes after instillation, which does not bother me at all. But it also gives me a "heavy" feeling of my eyes, which is very mildly head-achey, and I don't care for much. However, I think I am getting used to it--seems to bother me less now.

    2. The good news: no horrible Restasis-like stinging. There is a brief mild sting right on instillation, but it goes away within seconds.

    3. The drug leaves a very bad taste in the back of my throat. I would not have guessed this would have bothered me as much as it has. It is really nasty, and I have taken to sucking on sugarless candy all the time to keep this taste down. I think this may be worsened right now due to some post-nasal drip I have from allergies (change of the weather and all). Hoping it either goes away when I'm not as drippy, or else I get used to it.

    So far, so good, I would say. This is not nearly as caustic as Restasis. I am still using a good amount of Dakrina, and some refresh tears, but so far, no big problems with the drug. One thing, though: I wonder why all of these drugs seem to be in a lipid base (like restasis, which is in castor oil)? Do they need to be in lipid to be effective, or do the drug companies think that dry eye sufferers prefer lipid base? Because I definitely don't--I like good old refresh drops, and of course Dr Holly's drops. All of the lipid-based drops I've tried (even Freshkote), have not agreed with my eyes very well...

    I'll keep you updated as things go along.

  • #2
    Thanks for the update, Erik. I'm glad there's no sting. Here's hoping. I'm praying for good news.

    Diana
    Never play leapfrog with a unicorn.

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    • #3
      Eye Research

      Hi Erik
      I saw your post on the eye research - how are you doing with the program - are you seeing any results with the drops - You mentioned that your drops were mikly white drops - I was surprised - the drops that I was given are clear drops - I have now been in the program for 18 weeks and finish up on July 14 - 2005 - I'm hoping they will tell me if I had the real drops or the placebo drops. Dr Long said they are not seeing much improvement in my eyes because they are so damaged from sjogrens and are not repairable - but I have found that since I have been in the study that I can tolorate lights better than I could before - they are still very dry - so he is hoping in my case to be able to keep them comfortable and keep them from going back to being so light sensitive again. They told me that they are seeing great success from the study so far - which is GREAT NEWS. Hope you are seeing good results from the study - BEST OF LUCK
      Grandmajane

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      • #4
        ete study

        The drops I use are milky too. It causes a terrible taste in my mouth. But I notice that my nose is not as dry anymore. I too notice a heaviness in my lower lids. Its time consuming to do the drops 4x a day and the Refresh plus in between. sometimes I just ignore them and go about my things. I have my second study appointment in the morning. I will post what the doctor finds out.
        Phyl

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        • #5
          Lipid-based eye drops

          Erik, you asked why the drops seem to be in a lipid base. For me at least, it slows down the evaporation of my tears and keeps my RGPs floating better on my eyes. If I use just plain old saline, my tears break up really fast and then my contacts seem to dry out in places on my eyes and it looks like I'm trying to see out of a dingy, splotchy windshield.

          I guess all of us have different issues with the various components of our tears; I hear that some people's tears are too high in lipids.

          Good luck and good on you for loaning your dry eyeballs to medical science!

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          • #6
            Dry eye study

            The session with the doctor went well today. I had the green drops put in and the tear strip after the hour visit. The stained effect around my eyes lasts about 1 1/2 days. Dr thinks I may be on the drug as the testing was up this time. Another of his patients has showed results too after only 2 weeks. I am only using the Refresh Plus drops several times a day. Whether this is become doing the drops 4 x a day can be consuming into your days activities. My bottom lid feels heavy and told them about it. The horrible taste in my mouth is yucky. But brushing my teeth and sucking on hard sugar free candy. A plus is -- I have lost 3 # in the last 2 weeks without effort. Hurrah.!!!
            Phyl

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